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Western Medicine FAIL. What's next? (Acid Reflux Help.)
Right now, I'm a bit desperate.
I have GERD. I've tried just about everything and things seem to be getting worse.
Every night I wake up at least once with acid burning at my throat. Every morning I wake up hoarse, with my throat so full of mucus I can't talk right for almost 30 minutes. After every meal I can feel my throat tightening, my back hurting, my tongue and mouth burning. Sometimes there's pain in the chest, but it's rare. Usually the pain is in the throat and right below the sternum. In one way or another I'm in almost constant pain. I used to have a wonderfully baritone voice. Now I sound like a smoker.
I sleep at an angle. I've lost weight (almost 100 lbs). I eat between 6 and 8 small meals per day. I've tried Prevacid, Nexium, Prilosec, Protonix, Zantac, Pepcid. I chew on Gaviscon and calcium antacids like they're candy, and drink Maalox and Mylanta like they're water. (OK, I exagerate a bit, but it's not uncommon for me to hit the max daily dosage.) I exercise. I lead a generally low stress life. At least I did.
I've been told I have a lazy gallbladder (EF 20%), and that I have gallstones. I've also been diagnosed with gastroparesis (50% emptying was at 80 minutes, expected was 70). I want to have my gallbladder taken out because I've had multiple attacks, and because I've heard of people complaining about heartburn when they have gallbladder disease (my mom, grandmother, sister, mother in law, and brother in law are prime examples), but the GI doc says wait: he wants to do a Bravo PH test to make sure I really DO have too much acid instead of too little. (Could the burning TONGUE and throat be anything else?!) The last EGD revealed Reflux esophagitis, mucosal irritation, and mild gastritis. An ENT says he could see acid damage to my vocal chords, and my allergist could see damage at the back of my throat.
I don't eat chocolate, or coffee, or mints, or citrus, or fatty foods, or fried foods, or sodas, or most juices. I don't eat at least 5 hours before going to bed. I walk after meals, and exercise regularly, walking and biking. I've tried going gluten free and casein free. I've tried going vegan. Right now 60% of what I eat is organic raw fruits or veggies, with the rest being either meat (mostly fish, sometimes chicken; no beef or pork), grains (mostly gluten free grains), or dairy (fat free milk or cheeses). I drink water constantly. As you can see, my diet is fairly alkaline.
I don't feel like I can talk to anybody about this because I feel I'm being allowed to go through hell by doctors who want to feed their intellectual curiosity. I'm fine with that, actually, except for the part where they can't see me but every few months then get me into their office and rush me out as soon as they can.
So my question is what alternative treatments are out there for me? Western medicine has failed me MISERABLY and I have no idea what to do. None. I was thinking of some of trying out some of these "solutions" sold on the internet where you eat some type of apple and drink some kind of something else and they claim a 97% efficiency rate. (They look about as trustworthy as Wall Street bankers.) I was also thinking of some of these detox and colon cleansing things (Dr. Natura is one) which claim they can help. (These look slightly more trustworthy.) I thought maybe acupuncture could do it, but at $80 a treatment, I can't afford too many. After that...
Sorry for the long post, but I really don't know what to do. I'm looking for answers and the stones are starting to look like they might be hiding something underneath.
I have GERD. I've tried just about everything and things seem to be getting worse.
Every night I wake up at least once with acid burning at my throat. Every morning I wake up hoarse, with my throat so full of mucus I can't talk right for almost 30 minutes. After every meal I can feel my throat tightening, my back hurting, my tongue and mouth burning. Sometimes there's pain in the chest, but it's rare. Usually the pain is in the throat and right below the sternum. In one way or another I'm in almost constant pain. I used to have a wonderfully baritone voice. Now I sound like a smoker.
I sleep at an angle. I've lost weight (almost 100 lbs). I eat between 6 and 8 small meals per day. I've tried Prevacid, Nexium, Prilosec, Protonix, Zantac, Pepcid. I chew on Gaviscon and calcium antacids like they're candy, and drink Maalox and Mylanta like they're water. (OK, I exagerate a bit, but it's not uncommon for me to hit the max daily dosage.) I exercise. I lead a generally low stress life. At least I did.
I've been told I have a lazy gallbladder (EF 20%), and that I have gallstones. I've also been diagnosed with gastroparesis (50% emptying was at 80 minutes, expected was 70). I want to have my gallbladder taken out because I've had multiple attacks, and because I've heard of people complaining about heartburn when they have gallbladder disease (my mom, grandmother, sister, mother in law, and brother in law are prime examples), but the GI doc says wait: he wants to do a Bravo PH test to make sure I really DO have too much acid instead of too little. (Could the burning TONGUE and throat be anything else?!) The last EGD revealed Reflux esophagitis, mucosal irritation, and mild gastritis. An ENT says he could see acid damage to my vocal chords, and my allergist could see damage at the back of my throat.
I don't eat chocolate, or coffee, or mints, or citrus, or fatty foods, or fried foods, or sodas, or most juices. I don't eat at least 5 hours before going to bed. I walk after meals, and exercise regularly, walking and biking. I've tried going gluten free and casein free. I've tried going vegan. Right now 60% of what I eat is organic raw fruits or veggies, with the rest being either meat (mostly fish, sometimes chicken; no beef or pork), grains (mostly gluten free grains), or dairy (fat free milk or cheeses). I drink water constantly. As you can see, my diet is fairly alkaline.
I don't feel like I can talk to anybody about this because I feel I'm being allowed to go through hell by doctors who want to feed their intellectual curiosity. I'm fine with that, actually, except for the part where they can't see me but every few months then get me into their office and rush me out as soon as they can.
So my question is what alternative treatments are out there for me? Western medicine has failed me MISERABLY and I have no idea what to do. None. I was thinking of some of trying out some of these "solutions" sold on the internet where you eat some type of apple and drink some kind of something else and they claim a 97% efficiency rate. (They look about as trustworthy as Wall Street bankers.) I was also thinking of some of these detox and colon cleansing things (Dr. Natura is one) which claim they can help. (These look slightly more trustworthy.) I thought maybe acupuncture could do it, but at $80 a treatment, I can't afford too many. After that...
Sorry for the long post, but I really don't know what to do. I'm looking for answers and the stones are starting to look like they might be hiding something underneath.
Actually, a PH test is exactly what this dr. wants me to do: Instead of having the gallbladder removed, wait and have the PH test. However, my GP has all but ordered me to get the gallbladder out now that I've been having almost daily problems with it. Before I go with something as major as a Niessen, even if I do have a hiatal hernia (which had been unsymptomatic for years), I'll take the gallbladder I know to be faulty out and see how things go. The symptoms are in line with my family's symptoms and if that's any indication then removing it will be helpful. I don't know what caused the dyskinesia (I guess it was a post viral issue because it failed after I started having panic attacks and got sick with a virus for a couple of months), but I know what caused the stones: Losing 40 lbs in a few months, and 90 lbs in about 2 years. That's pretty rapid weight loss.
@DeeDee97
I've had an upper endoscopy, 2 gallbladder CT, a HIDA/CCK, a gastric emptying exam. Next test is a Bravo PH test, though I might have my GB taken out before then. The doc that performed them (not the current doc) didn't find any bile in my stomach, just gastritis and esophagitis caused by acid exposure.
@DeeDee97
I've had an upper endoscopy, 2 gallbladder CT, a HIDA/CCK, a gastric emptying exam. Next test is a Bravo PH test, though I might have my GB taken out before then. The doc that performed them (not the current doc) didn't find any bile in my stomach, just gastritis and esophagitis caused by acid exposure.
I have had severe sore throats ,a lump in my throat, a bitter taste in my mouth,stomach pain and occasional chest pain. I have been on Prilosec, Protonix, Zantac, and am currently on Nexium twice a day. I've only been on it for a week so I'm not sure if it's working yet. I went for an upper endoscopy last Tuesday and will get the results from the biopsy tomorrow. The GI doctor found there was a lot of bile in my stomach. Instead of acid reflux it may be bile reflux in which case none of the mentioned medecines will work. Have you had an upper endoscopy?
I agree with ggreg that your GI dr is not doing his job. All GI drs specialize in one area or the other. Although they work on all. If you once had a hiatial hernia you have it now.
You may also have gallbladder problems and reflux. Have this dr or a new GI dr do a 24 hour ph test to see how much acid is coming up. He can't refute this test.
If you have reflux and a hiatial hernia (which does not go away) find the best bariatric surgeon in your area that has preformed lots of Fundo Nissen by laproscopic. Make sure he is skilled at doing a loose wrap. That is extremely important. Then go see him.
I had reflux for 8 years. My GI dr didn't want to have the Nissen done. Finally I told him that I could not live that way anymore. He had the PH test done which showed reflux. When the surgeon did the Nissen he also repaired the hiatial hernia. I no longer have reflux and life is so much better now.
You may also have gallbladder problems and reflux. Have this dr or a new GI dr do a 24 hour ph test to see how much acid is coming up. He can't refute this test.
If you have reflux and a hiatial hernia (which does not go away) find the best bariatric surgeon in your area that has preformed lots of Fundo Nissen by laproscopic. Make sure he is skilled at doing a loose wrap. That is extremely important. Then go see him.
I had reflux for 8 years. My GI dr didn't want to have the Nissen done. Finally I told him that I could not live that way anymore. He had the PH test done which showed reflux. When the surgeon did the Nissen he also repaired the hiatial hernia. I no longer have reflux and life is so much better now.
"Every night I wake up at least once with acid burning at my throat. Every morning I wake up hoarse, with my throat so full of mucus I can't talk right for almost 30 minutes. After every meal I can feel my throat tightening, my back hurting, my tongue and mouth burning. Every night I wake up at least once with acid burning at my throat. Every morning I wake up hoarse, with my throat so full of mucus I can't talk right for almost 30 minutes. After every meal I can feel my throat tightening, my back hurting, my tongue and mouth burning."
OptionsAreMany,
these are sypmtoms of laryngopharyngeal reflux (LPR) which causes, among other things, bad breath, u can google it.
OptionsAreMany,
these are sypmtoms of laryngopharyngeal reflux (LPR) which causes, among other things, bad breath, u can google it.
While I've come up with a few messages online that say the same thing (people getting reflux after surgery) everybody I've met face to face has told me that the refux got better for them after the surgery. Probably an individual thing, though.
No signs of duodeno-gastral reflux that I know: nothing has been mentioned about that to me, ever.
Bad breath: I used to, when I felt my food sticking around in my stomach for very long. Now that the food doesn't seem to hang out there as long the bad breath is a once in a blue moon thing. However, from my understanding it's from food being in the stomach too long, not because of the acid causing damage.
No signs of duodeno-gastral reflux that I know: nothing has been mentioned about that to me, ever.
Bad breath: I used to, when I felt my food sticking around in my stomach for very long. Now that the food doesn't seem to hang out there as long the bad breath is a once in a blue moon thing. However, from my understanding it's from food being in the stomach too long, not because of the acid causing damage.
I have the same problems except that I haven`t had multiple attacks from the gallbladder stones.
I wouldn`t have my gallbladder taken, I came across so many posts by people who have had their gallbladders removed and have severe reflux.
Do u have duodeno-gastral reflux? There are some medications u can try to prevent this.
Do u have bad breath from the damage the acid is causing to ur throat?
I wouldn`t have my gallbladder taken, I came across so many posts by people who have had their gallbladders removed and have severe reflux.
Do u have duodeno-gastral reflux? There are some medications u can try to prevent this.
Do u have bad breath from the damage the acid is causing to ur throat?
I'm less inclined to thing the guy's a knucklehead and more inclined to believe he's too smart for my own good. But I always give people the benefit of the doubt, so I may be too kind here. The doc, by the way, is Jay Mamel, at the University of South Florida Health Clinic (Medical research center).
Regarding my HIDA score, he doesn't put much credibility to it, saying that HIDA scans are inherently flawed. In our first meeting he dismissed the score (done by another doctor, switched only because I moved) immediately and said it didn't matter. The gallstones developed after very rapid weight loss, as far as I can tell.
As for cholesterol, it's been checked multiple times. HDL is too low (37), LDL is low also (59), with the total cholesterol hovering around 122 (+/-5) as per the last couple of tests. I've also had my liver enzymes checked. All fine. The only thing that was odd was bilirubin, which has bordered on "high" for a while now (never out of the "normal" range, but certainly in the high end of that).
I'm in agreement with you that I think the GB malfunction is slowing digestion and causing the heartburn. Other than the burning tongue when I get heartburn (yes, it burns, and it twitches, and it's painful), my family members all describe very, very similar symptoms. (My mom even got to the point of vomiting undigested food, which is something I was doing when this all started but I don't anymore. This is when I got checked for Gastroparesis. She's told me "I'm glad I got the gallbladder taken out first," since that resolved the issue.) I've told this to the doc. He still wants to do the test, even though the last meeting with my primary started with him opening the door and declaring, "You need to take your gallbladder out NOW." I'll be calling him to see what I should do.
I don't know, maybe he's trying to find out the underlying issue causing all of this for our family. It's why I started considering liver cleanses and alternative therapies: maybe there's a root problem to all this (which started with the gallbladder's ejection fraction plummeting). The thing is, no one's had problems after removal, so I'm wondering whether weak gallbladders are genetic in our case, just as weight tends to be an issue.
Regarding my HIDA score, he doesn't put much credibility to it, saying that HIDA scans are inherently flawed. In our first meeting he dismissed the score (done by another doctor, switched only because I moved) immediately and said it didn't matter. The gallstones developed after very rapid weight loss, as far as I can tell.
As for cholesterol, it's been checked multiple times. HDL is too low (37), LDL is low also (59), with the total cholesterol hovering around 122 (+/-5) as per the last couple of tests. I've also had my liver enzymes checked. All fine. The only thing that was odd was bilirubin, which has bordered on "high" for a while now (never out of the "normal" range, but certainly in the high end of that).
I'm in agreement with you that I think the GB malfunction is slowing digestion and causing the heartburn. Other than the burning tongue when I get heartburn (yes, it burns, and it twitches, and it's painful), my family members all describe very, very similar symptoms. (My mom even got to the point of vomiting undigested food, which is something I was doing when this all started but I don't anymore. This is when I got checked for Gastroparesis. She's told me "I'm glad I got the gallbladder taken out first," since that resolved the issue.) I've told this to the doc. He still wants to do the test, even though the last meeting with my primary started with him opening the door and declaring, "You need to take your gallbladder out NOW." I'll be calling him to see what I should do.
I don't know, maybe he's trying to find out the underlying issue causing all of this for our family. It's why I started considering liver cleanses and alternative therapies: maybe there's a root problem to all this (which started with the gallbladder's ejection fraction plummeting). The thing is, no one's had problems after removal, so I'm wondering whether weak gallbladders are genetic in our case, just as weight tends to be an issue.
I hate to say this, but your GI doc is a knucklehead...wanting to do a test to make sure you've got acid. Heck yeah, you've got acid, especially when two other docs have noticed the acid bubbling up has injured your vocal cords and back of throat. And it really doesn't take rocket science to know it's your gallbladder, especially with two primary family members with GB disease. The trick is, how come you have it. Well, you know, that would be a fine thing if the GI doc could figure that one out, so half your family could be cured! Now, if you get that gland outta there, the same thing that produced stones in it, will continue to be at work. Has something to do with the way the body breaks down cholesterol, but any further than that, and I'd be writing fiction here.
I think you have worked it this waay too long, when you get blood drawn as an above poster suggested, get them to chek yur cholesterol levels, and ask your regular family doc whenever you see him in 6 mos to edubicate you on the matter. But in meantime, switch to a diff GI and tell him you want that thing OUT OF YOUR BODY. It causes very little metabolic difficulties, if any, but you need a first-rate surgeon, of course. If you need to travel, do so. The reason you have acid is because ain't nothing getting thru your stopped-up gallbladder. God speed.
I think you have worked it this waay too long, when you get blood drawn as an above poster suggested, get them to chek yur cholesterol levels, and ask your regular family doc whenever you see him in 6 mos to edubicate you on the matter. But in meantime, switch to a diff GI and tell him you want that thing OUT OF YOUR BODY. It causes very little metabolic difficulties, if any, but you need a first-rate surgeon, of course. If you need to travel, do so. The reason you have acid is because ain't nothing getting thru your stopped-up gallbladder. God speed.
I've not yet done any intestinal bacteria tests, so I'll check that out. That said, I've taken digestive enzymes and they weren't particularly helpful. Also, I've been checked for a hiatal hernia. Twice. Eleven years ago (when I was 18) a barium test revealed a hiatal hernia (sliding). An EGD last year (age 28) revealed no hernia there. Doctor never explained why this could have been.
Get a stool test from Genova Diagnostics, find out if your intestinal bacteria balance is good and how your digestions doing. Take digestive enzymes, get checked for a hiatal hernia
A few more items: The gastroparesis is currently being "treated" by Domperidone. I can't tell whether it's working or not because I don't feel any different whether I'm on the drug or not. No comment on Reglan as I haven't yet tried it (and from the sound of things, I don't want to.) I'm wondering about that diagnosis, however, as I've read that being on PPIs might slow down digestion. I've also heard from people that gallbladder issues will make foods stick for longer than they should. (Again, this from family members who've had GB issues.)
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